Autoimmune Encephalitis Alliance
It is often difficult to clinically diagnosis autoimmune encephalitis because patients’ symptoms can be so widely varied. In the Sept. 2016, issue of The Lancet Neurology, Francesc Graus and colleagues proposed an initial diagnostic work-up relying on conventional neurological evaluation and standard diagnostic tests such as MRI, CSF sampling, and EEG. This approach would enable clinicians to make […]
World Encephalitis Day (“WED”) is celebrated every February 22 – just remember 222. While we at the Autoimmune Encephalitis Alliance focus on autoimmune encephalitis, we are so happy to join in supporting all of those affecting by any form of encephalitis. To show your support for those with encephalitis of all types, wear the color red […]
One of the one of the largest university hospitals in Europe, Charite’, recorded significant progress in treating anti-NMDAR, including in patients who did not previously respond to treatment. Anti-NMDA receptor encephalitis is an inflammatory disease that affects the central nervous system. It is a rare autoimmune disease that results in the body producing antibodies against […]
Did you know that our largest fundraiser is coming up on March 4, 2017, in Durham NC? That’s right, it is time for the 5th annual Florence Forth run/walk, and Family Lunch. Individuals and teams are welcome. The events in 2016 attracted almost 1500 runners/walkers, 300 volunteers, and 150 family members of those affected by […]
The Autoimmune Encephalitis Alliance and Option Care Enterprises, Inc. are co-sponsoring a clinical trial at Mayo Clinic to evaluate intravenous immunoglobulin (IVIG) treatment in patients with autoimmune epilepsy who fail to benefit from standard epilepsy medications. This study, the first of its kind, builds on Mayo Clinic research advances identifying new approaches to the diagnosis and treatment […]
In her New York Times bestseller Brain on Fire: My Month of Madness, journalist Susannah Cahalan describes dreadful psychological experiences associated with her eventual diagnosis of autoimmune encephalitis. Compared with other forms of autoimmune disease and other types of encephalitis, knowledge about this particular diagnostic entity seems to be unfamiliar to most physicians; the medical […]
Jamie David Smith has written a terrific article on the struggles of siblings of special needs children. Smith speaks to Rachel Feichter whose daughter, Talia, has autoimmune encephalitis. “Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. […]
Suzi and Bob Given have contributed $25,000 to establish a matching campaign for the Autoimmune Encephalitis Alliance. This means donations we receive will be matched 1:1 up to $25K, by the Given’s gift. Bob is recovering from autoimmune encephalitis and states, “I directly benefited from the work being done by AEA, as have so many others. This donation […]
A special thanks to Emily for guest blogging for AEA. Here is her story. 2015 was shaping up to be a great year. I had moved to Charlotte, NC just over 2 years ago and bought my dream town-home in one of the most sought after neighborhoods. I found my groove here, and had a […]
The Autoimmune Encephalitis Alliance, along with Children’s National Health System, and the Childhood Arthritis and Rheumatology Research Alliance, co-sponsored the first International Pediatric Autoimmune Encephalitis Treatment Consensus Meeting at the Carnegie Endowment for International Peace in Washington, DC, on November 14. “The AE Alliance was honored to help bring many of the world’s leading experts […]